Renal Cancer Core Outcome Sets
Renal cell cancer represents 2-3% of all cancers with the highest incidence in Western countries. Over the last two decades the incidence of RCC increased by about 2%, both worldwide and in Europe. The incidence varies globally, with the highest rates in developed countries such as North America and Europe and the lowest rates in Asia and Africa. In Western European countries this incidence stabilised over the past decade. In 2012, there were approximately 84,400 new cases of RCC and 34,700 kidney-cancer-related deaths in the European Union.
Aim of Study
The methods for each of the three COS will follow broadly the same process.
1. To identify a long list of outcomes reported in prior RCC intervention studies: Systematic reviews of RCTs included in relevant clinical practice guidelines and/or systematic reviews of intervention effectiveness (one each and separately for L-RCC, LA-RCC and M-RCC).
2. To identify outcome considered as important by patients who have experience RCC and its treatments: Systematic reviews of qualitative studies reporting on the experiences of RCC patients and/or primary qualitative interview studies (one each and separately for L-RCC, LA-RCC and M-RCC).
3. Delphi surveys involving urologists, oncologists, cancer specialist nurses (grouped as health care professionals) and RCC patients who have received treatment, to score the importance of each outcome identified (one each and separately for L-RCC, LA-RCC and M-RCC).
4. Consensus meetings with representatives from each stakeholder group to discuss and vote on unclear results from the Delphi and to ratify the COS (one each and separately for L-RCC, LA-RCC and M-RCC).
5. Assess the definitions and measurements for clinician reported outcomes (for example recurrence, progression etc) and where there is no one clear most appropriate and feasible definition and measurement we will engage HCPs in a consensus processes to identify the most appropriate definitions and measurement for specific purposes such as RCTs and routine clinical data collection
6. Assess the psychometric properties of each PROM identified for L-RCC, LA-RCC and M-RCC and where there is no one clear ‘best’ and most feasible PROM we will engage HCPs in a consensus processes to identify the most appropriate PROM for specific purposes such as RCTs and routine clinical data collection
Bladder Cancer Core Outcome Sets
Heterogenous outcome reporting in non-muscle-invasive bladder cancer (NMIBC) effectiveness trials of adjuvant treatment after transurethral resection (TURBT) has been noted in systematic reviews (SRs). This hinders comparing results across trials, combining them in meta-analyses, and evidence-based decision-making for patients and clinicians.